Every story has a beginning, and an end.
Our entry into the world is eased by midwives, who know the ropes and what everyone in the room needs. This week the Gazette talked to two ‘midwives’ of the other end of life – the hugely dedicated staff in Hawkesbury Hospital’s palliative care unit within the Maria Lock ward.
It’s a very different area of nursing, and you wonder how they cope when all their patients die, unlike the hope and triumph involved in other areas of nursing.
Our expectations however were turned on their head when the Gazette asked if they needed to ‘hit the sherry’ at home to cope.
“It’s a privilege to be involved in somebody’s care at that term of their life,” clinical nurse specialist Debbie Colquhoun said.
“They’re feeling vulnerable, frightened, and to be entrusted with their care is an incredibly rewarding time. To help them die a comfortable and dignified death. I love this area of work.
“My first job was in a nursing home when I was 20 and it was confronting.”
Confronting in what way?
“By looking at what we become – so fragile and so in need of love and care and compassion. Six months down the track I couldn’t imagine working with any other age group. It’s so rewarding. We feel like we make a difference to someone.”
There are plenty who feel the same way – there are 32 nurses attached to the ward, between their 20s and 60s and all female.
Palliative care nursing unit manager Katica Siric said there have been male nurses there, but “they tend to go more for the critical areas – ICU and emergency”.
The pair agreed it was the most emotionally and physically challenging area of the hospital, so what makes a good palliative care nurse?
“Compassion. Empathy. Patience. Advocacy,” Ms Colquhoun said.
Advocacy is important, requiring mediation and psychology skills as it’s not just the patient the staff are dealing with but grieving families. How do they cope when the family want something different to the patient?
Ms Siric said sometimes the family is not ready to let them go. “They know it’s inevitable but they’re not ready,” she said.
“Sometimes the family see they need pain relief but they don’t want them to take it as it makes them too drowsy.”
Ms Colquhoun said it can always be resolved. “We will explain to the family that our priority is the patient and the comfort of the patient.”
In an area where the ultimate outcome is non-negotiable, everything else is. Family members can sleep over, their pets can come in, you can have the paintings in the rooms changed.
What about cultural expectations that are different?
“We’ve had no real problem with cultural clashes,” Ms Colquhoun said. “We really respect other cultures and cater to them. We’ve had a smoking ceremony in the garden here for an Aboriginal patient, overseen by Vicki Thom who helps all the Aboriginal patients.
“Other cultures ask to wash their family member after they’ve passed. That’s fine too. We also have a loungeroom in the ward for cultures where large numbers of family members want to come in.”
Staff will also discuss with the family and patient whether they want any form of pastoral care – whether it’s a priest, rabbi or minister of any other religion or belief.
“And there are no strict visiting hours in palliative care – you can come in any time,” Ms Colquhoun said.
It’s not a one-way trip to the ward either – it’s somewhere that people come in and out of over sometimes a matter of months.
“Patients often come in here, go home again, come back for pain management and get treatment plans put in place, and go home again. Then they might develop an infection and come back in again.”
What about when their time is near?
“When the clinical signs indicate that death is close, we call the family, let them know their loved one is deteriorating and make sure they’re OK to get here,” Ms Colquhoun said.
“By then we’ve normally figured out the family dynamic, who’s coping, who’s not, and we’ll make sure everyone important is kept in the loop. We’ll have spoken to the family and gauged how they want to be told when the time is close.”
As might be expected, they said people die in different ways. To some it’s very important they’re not alone. “The fear of dying alone scares them a lot,” Ms Siric said.
Ms Colquhoun said when someone’s time is near and the family has been called, “we’ll stay with the patient and hold their hand while we wait for the family”.
Other patients prefer their family not to be there.
“Some patients will pass when their family has left,” Ms Colquhoun said. “You get the feeling they’re waiting for someone or something. My own feeling is that they don’t want their family members to see when they actually pass away.”
She said some have hung on for two or three weeks beyond when they were capable of taking any food or drink, especially if they’re worried about something.
Ms Siric said even humour comes into it at times, and the staff roll with that too. “One lady well into her 90s would say to me ‘can’t you just let me go?’ and I said ‘darlin’, we can’t do that’,” Ms Siric said. “I said ‘the bloke up there isn’t ready – they must have a queue at the gate or something!’ and we had a laugh together.”
Ms Colquhoun said that sort of exchange wasn’t unusual and the humour can be important – not just for patients but as a means of supporting each other too.
“Older people will tell you they’ve had enough of life,” she said. “They’ll say ‘I’ve had a good life, I’ve taken care of my family, can’t you let me go?’.
“A lot of people perceive palliative care as really serious, but we all end up with a bit of a quirky sense of humour as a method of coping. We have a very close knit team and we look after each other.”
Ms Siric agreed. “We’re very open and honest with each other.”
“To meet the demands of our patients’ needs is quite an extraordinary thing,” Ms Colquhoun said. “We’re dealing with lots of emotions – patients in pain waiting for pain relief, or waiting for a shower – their needs are paramount to them and you’re trying to prioritise their care to meet everyone’s individual needs and find that balance. By keeping them informed they know what you’re up to.
“You have to have a certain attachment – and detachment. You compartmentalise what you have to do in order to provide the care that’s needed.” As a part of this she said she had no problem going home and switching off.
“It’s not my journey, it’s their journey.”
Has the work changed their own beliefs or ideas about dying?
“I would happily come to Maria Lock and be cared for here,” Ms Colquhoun said. She said it hasn’t changed her spiritual ideas, “but it’s given me an idea on what instructions I want to give my own family”.
Dealing with the needs of the patient’s family is another important aspect of their work.
“We ask the family member ‘how are you, how are you going today, do you need me to give you a hand with that. People might break down and say ‘I really needed you to say that to me’.
“They’ve been doing everything they can for their loved one and it’s like they need to be given permission to hand over some of the [caring] jobs to the nurses.”
There are services the family can access at the hospital too, to help them cope, such as counselling, pastoral care and other resources.
Just keeping the family members informed on what to expect as their loved one deteriorates can really help them too.
“The paitent gets to the point where they’re unconscious most of the time, and if the family know what to expect [over coming days] they aren’t as worried when they see things change,” Ms Colquhoun said.
When the end comes, instead of being traumatic, it can be a time of great peace.
“I like seeing the patient finally at peace, that it’s finally come to an end,” Ms Siric said. “Their expressions. A patient who passed away – it was like she had a grin. We aim for a good, peaceful, dignified death, free from pain.”
Ms Colquhoun said while people sometimes think that, as it used to be in movies, the room should be darkened when someone’s time is near, she said she will often consult with families to suggest the opposite.
“We’ll position a patient to see out the window, and open the curtains so they have a good view as one of the last things they see – like their soul can fly out the window.”